Learning to Live Without Gluten

Mary Schluckebier spent 10 years suffering from a variety of aches and pains. One day she would have migraines and constipation, the next a backache and weakness. On the third day, she may feel fine.

Her illness was mysterious. She didn't understand the flux of symptoms.

"It was 10 years between the onset of symptoms and the diagnosis," she says. "I lost my 30s. I never knew when I was going to feel well and when I wasn't. It was a guessing game."

When physicians finally realized Schluckebier had decreased potassium levels, they determined she must be suffering from a malabsorptive illness. In fact, her body was allergic to gluten. Every time she ate something containing wheat, barely, rye or oats, gluten would damage her small intestine, making her body unable to absorb nutrients.

"I had atypical symptoms," she says. "I would get migraine headaches. If someone sneezed three blocks away, I caught a cold. I had a weakened immune system and a lot of fatigue."

What physicians did not know in 1986 was they should have been testing Schluckebier years prior for celiac sprue. Her father also suffered from the illness.

"I felt so bad that it was very easy to go on a gluten-free diet," she says. "I was familiar with it because my dad had been diagnosed, but at that time they didn't know it was genetic. So it was never considered when I had strange symptoms."

Today, Schluckebier is the executive director and president of the U.S. Celiac Sprue Association. She has led the group for two years and is on a mission to have food and pharmaceutical products in the United States labeled with information concerning gluten.

"Pharmaceuticals do not have to label the inactive ingredients," she says. "It is very difficult to know if you are taking medicine with fillers that may be a wheat, oat, rye or barely base. And the manufacturers cannot always tell you. Most do not test for gluten in their products."

A significant problem in the progression of treatment options for celiac sprue patients lies in the lack of research interest and funding.

"We don't have an animal model," she says. "We don't have any research that shows how much gluten can be tolerated before an allergic reaction occurs. Plus, we don't have a testing method. This makes it very difficult for manufacturers to produce a gluten-free diet for someone."

She describes her own challenge of finding information from pharmaceutical companies when being prescribed a new medication.

"I went on one pill, and the physician, pharmacist and I checked to see if it was gluten free. Low grade testing showed it had some gliadin in it. I started having strange symptoms immediately."

Because there is no testing regimen or industry standard, celiac sprue patients often have to use a trial-and-error system.

"I know that I did better when I switched to another company's pharmaceutical," she says. "It was a pill I was taking every day."

Schluckebier, whose son was also diagnosed with celiac sprue, says the illness has become the most prevalent genetic disease in the United States and Europe. She said new estimates show one in 111 Americans have the illness.

While eating gluten-free foods has been a challenge, Schluckebier has a good attitude.

"I can only eat out at the best places," she says. "I can have a steak and potato and a tossed salad any time. Most egg products are good. I can take my own gluten-free roll to a restaurant. I take my own dough to the pizzeria and they put the sauce on it and cook it on my own pan."

There are no pharmaceuticals to treat celiac sprue to date. Patients are recommended to follow a strict diet.

Additional information about the U.S. Celiac Sprue Association is available at www.csaceliacs.org. 

Did You Know?

The following foods are recommended for celiac sprue patients:

• Flour and starches made from rice, corn, potato, tapioca, seeds, arrowroot, beans, peas and nuts.
• Non-processed/non-flavored meats, poultry, fish, eggs, fruits and vegetables.
• White wine or apple cider vinegar.
• Dairy products without gluten-containing additives, flavorings or dyes.

The following foods should be avoided:

• Flours
• Starches
• Additives from wheat, barley, rye, oats and their derivatives

The following foods are questionable:

• Processed meats
• Sauces
• Bouillon
• Selected condiments
• Vinegar
• Salad dressing
• Processed sour cream
• Processed cheeses
• Modified food starch
• Hydrolyzed or textured plant or vegetable proteins
• Malt
• Flavoring, coloring, emulsifiers, stabilizers and preservatives
• Certain oils
• Alcohol